Empirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of research resources, including expertise and funding. This paper describes a consultation process that sought to develop an agenda for research priorities for palliative care of people with intellectual disabilities in Europe. A two-day workshop was convened, attended by 16 academics and clinicians in the field of palliative care and intellectual disability from six European countries. The first day consisted of round-table presentations and discussions about the current state of the art, research challenges and knowledge gaps. The second day was focused on developing consensus research priorities with 12 of the workshop participants using nominal group technique, a structured method which involved generating a list of research priorities and ranking them in order of importance. A total of 40 research priorities were proposed and collapsed into eleven research themes. The four most important research themes were: investigating issues around end of life decision making; mapping the scale and scope of the issue; investigating the quality of palliative care for people with intellectual disabilities, including the challenges in achieving best practice; and developing outcome measures and instruments for palliative care of people with intellectual disabilities. The proposal of four major priority areas and a range of minor themes for future research in intellectual disability, death, dying and palliative care will help researchers to focus limited resources and research expertise on areas where it is most needed and support the building of collaborations. The next steps are to cross-validate these research priorities with people with intellectual disabilities, carers, clinicians, researchers and other stakeholders across Europe; to validate them with local and national policy makers to determine how they could best be incorporated in policy and programmes; and to translate them into actual research studies by setting up European collaborations for specific studies that require such collaboration, develop research proposals and attract research funding.

Background: As people live longer, they are more likely to die over a prolonged period from incurable, chronic illnesses that occur more frequently in old age. Therefore, people will experience an increase in end-of-life discussions and decisions. Aim: The aim of this study was to explore the prevalence and nature of end-of-life decisions for people with disabilities in Swiss residential homes. Design: A cross-sectional survey in the three biggest German-speaking regions in Switzerland (N = 209) was conducted. Setting: All of the residential homes for adults with disabilities (N = 209) were invited to participate in a cross-sectional survey. The response quote was 76.7%. Directors provided information on 82 deaths. Chi-square and t-tests were used to study differences in prevalence and nature of end-of-life decisions between people with intellectual disability (ID) and people with other disabilities. Results: An end-of-life decision was taken in 53.7% of the cases (n = 44). For people with ID, the decision to withhold treatment had been taken more often (28.9%, 13 cases) than for people with other disabilities (8.1%, 3 cases) (χ² (1, N = 82) = 5.58, p = 0.017). Conclusion: The study provides insight in end-of-life decision-making for people with disabilities in Switzerland. The results have implications on surrogate decision-making for people with ID living in residential homes. As the study partly confirms the results of previous studies, further studies will be necessary.

Objectives: People with disabilities are underserved in terms of health care and prevention, and special health conditions exist among older people with intellectual disabilities. The Swiss Health Survey only covers people over the age of 15 years living in private households. Therefore, this study aims to assess the health status of older persons living in residential facilities for adults with disabilities. Methods: A cross-sectional survey with written questionnaires was conducted in six cantons in Switzerland to capture context factors and the physical health status of persons aged between 50 and 65 years in residential homes in Switzerland. The survey collected data on physical and mental health from 241 persons aged 50–65 years living in residential homes for people with disabilities. This was compared with data from the 2012 Swiss Health Survey comprising a sample of 2261 persons of the same age with chronic morbidities living in their own apartments. Results: Regarding their health, 94.1% of the survey respondents rated it as being very good, good or moderate. Although higher limitations on activities of daily living, higher levels of psychological distress and lower energy and vitality were reported by all respondents, a lower level of health issues was assessed than in the sample of persons with chronic morbidities living in their own apartment. Conclusion: Low energy and vitality, high limitations on activities of daily living, high psychological distress, high obesity rates and the assessment of health issues and pain should be specifically addressed in residential homes for people with disabilities.

Objectives: The aim of this study was to explore the prevalence and nature of end-of-life decisions for people with disabilities in Swiss residential homes and determine their involvement making these decisions. Methods: All of the residential homes for adults with disabilities in Switzerland (N = 437) were invited to participate in a cross-sectional survey. The survey response quote was 58.2%. Residential home directors provided information on 233 deaths. The chi-square test was used to study differences in the prevalence and nature of end-of-life decisions between people with intellectual disability (ID) and people with other disabilities. The Mann–Whitney test was used to analyze differences in their involvement in end-of-life decisions. Binary logistic regression analyses were used to analyze factors determining the prevalence of withholding life-prolonging treatment from these residents. Results: A high prevalence of end-of-life decisions was found (70.4%). For people with ID, the decision to abandon life-prolonging treatment was more often taken (46.2%, 72 of 156 residents) than for people with other disabilities (24.7%, 19 of 77 residents) (χ²(1, N = 233) = 9.992, P ≤ 0.01). The following variables were positively associated with the decision to withhold life-prolonging treatment: presence of advanced directives (odds ratio [OR] 2.998; 95% CI 1.629, 5.518), degree of disability (OR 1.677; 95% CI 1.247, 2.256) and ID (OR 2.265; 95% CI 1.064, 4.823). Conclusion: This study provides the first insight into end-of-life decision making for people with ID in Switzerland. The results have implications on surrogate decision making for people with ID living in residential homes.